Hi All Friends - I just wanted to say a big thank you to all of you for responding to my post. I do hope through the responses you are able to make contact with others nearby via a post or by using the chat facility and I hope more will continue to add their locations.
Another way of making connections is via the PSPA Carer Zoom sessions. I understand these are set up by region although some of these are quite large geographically they are a great way to meet others in your area and share information or support each other. I have been a bit lax and havent joined in recently but am planning to put this right and will be joining the Zoom session for my region planned for 7pm tomorrow (Tuesday) Hope to see some of you there BW Millidog
PSP Warriors, This forum is amazing for sharing PSP care and support information from people far and wide and I like many others have benefited greatly from this and continue to do so.
Even with this group one can still feel quite alone and isolated caring for loved ones with PSP and by luck I have also found a few local connections via this site and have started to chat and meet individually sharing information about specific area help and support. It's like having your own psp support group and being able to more specifically support, make new friends and gain knowledge of how things operate in the region is invaluable
Someone mentioned recently it would be good if people shared their locations and I thought what a good idea, obviously only if people want to so I thought I'd start by saying I'm in Bridport, West Dorset so if anyone else is around the area do reach out.
Best Wishes Milli dog.
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Hi Millidog what a great idea. I live in Kelso Scottish Borders. I would love to meet or chat with someone going through the same experience as I do feel alone. This is a fantastic group 💜
It is a very good idea. I have by chance also met someone else caring for their husband with PSP/CBD and we have started meeting. Anyone near Worcester?
Hello there. Sorry to hear that you are a sufferer of this dreadful illness, your Mum must be distraught for you. I am in touch with a couple of other ladies and we meet in the cafétéria of St.Richards Hospice. You maybe could send me her number and I would let her know when we next meet. Take care. Sylvie.
Hi Miillidog my mum has just been properly diagnosed after a few years of showing symptoms. We are in Lancashire Poulton-le-Fylde just outside of Blackpool if there is anyone else in the area who would like to chat or has info in relevant groups in the area.
Hi thansk for responding I too am originally from Lancs and moved to Dorset a few yrs ago. I can see others on here near you so hope you are able to make contact XX
Hi Millidog, there has always been a missing link on our forum and you have filled it with this great idea. I am in with you all. I live in Nantwich, Cheshire and look after my wife with PSP since 2018.
Hi thanks for responding. Maybe we canb speak sometime, do message me via the chat facility if youd like to. Not sure if you participate on the PSP carer Zoom sessions but I am planning to tomorrow (Tuesday pm) Gx
Hi Anne, Lovely to hear from you and I just wanted to add my thanks to you. I have found great value in this site especially from you, Kevin 1, and a few others that were frequent communicators on this page a few years ago. Your knowledge and experience has certainly helped me prepare for changes and in securing CHC . so warm wishes and many thanks GXXX
How lovely to hear from you too. I often wonder how some of the 'old' guard are, Kevin, GrannieB and yourself, I never made it up to the pub in Victoria!
I was going to volunteer as a PSP Link helper but two arthritic knees are limiting my activities at present. Once they are sorted during the next six months I will review the situation...
Hi Anne, Lovely to hear back from you. I hope you keep well. I wasnt one of the old guard just an apprentice who learned so much from you, AliBee, GrannieB and Kevin and hope that I can help others as they continue to help me XXX
Hi Zerachiel. Please can you tell me more information about the meet up in Leicester. I didn't realise there were some face to face meetings as well. Thanks in advance 😊 x
Hi Jen295, I don’t know what stage you are at, but just wondered if you have heard of ‘Dance for Parkinsons’ held in Cardiff and, recently started, in Porthcawl. People with PSP are welcome ( and can remain seated). My wife goes to Porthcawl. There is a seated Tai Chi class held in Barry, which she also attends.
Hi PspuserThank you for that information I hadn't heard of either events and also didn't know of anyone in the Cardiff area with PSP. I will mention both to my husband Roger but he's not keen to do anything. He was diagnosed in 2021 and walks with a walker and uses a stairlift. He was never a dancer but did do Tai Chi for awhile during lockdown on Zoom with me via the Maggies centre at Velindre, so perhaps may be interested in that if it's seated. How do I find out about it?
Note it is really just movement, not really dancing.
Some stay seated.
Carers/ spouses can join in.
the tai chi class is run by Motion Control Dance at barry YMCA on a Wednesday. I’m not sure if you need to live in the Vale. I can’t find a direct link for the class, but the website for MCD is motioncontroldance.com/serv....
It’s a small group, usually between 2 & 6 people.
Emma, who runs MCD is very friendly & helpful.
My wife, Judith, was diagnosed last September. She uses a walker or a stick indoors, and can still just manage the stairs (not for much longer I think).
The O.T. advised us not to get a stairlift, so we are in the early stages of converting the garage.
I have checked with Motion Control Dance, the class is today at 2pm. You are welcome to attend if you live in Cardiff. The website is a bit of a mess, call them if you are interested 07725 038 778.
It’s a very relaxed affair, four people there today. If nothing else, it a chance to get out for a bit.
Hi Sunflower1777, I orginate from Rochdale well Littleborough actually so a Lancashire lass too but moved to Dorset 3 yrs ago. My sister lives in Shaw and I know someone local to her has PSP too as they had a fund raiser in her local pub...maybe youselves or someone else who might be on this site. If I can help in any way do message me via the chat and take care Gxx
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A beautiful moment... must share!
Glad to have a place to share information!
Mom with PSP in PA & helpful book
CBD CorticoBasal Degeneration Support Group
